Evaluation of the Quality of Life in Epileptic Children of Shiraz, Southern Iran.

Objectives People suffering from chronic diseases like epilepsy are highly prone to debilitating changes in factors that affect the quality of life (QOL) such as physical capacity, self-esteem, relationships with others and fulfillment of their daily life activities. This study attempted to evaluate QOL in children with epilepsy in Shiraz, Southern Iran. Materials & Methods Epileptic patients admitted at the epilepsy clinic of Shiraz University of Medical Sciences with no first time episode of seizures in the previous six months and no febrile-seizure were included in the study. The patients were evaluated using the standard KIDSCREEN-27 questionnaire. Data were analyzed using the statistical software SPSS 21 along with Man Whitney and Chi-square tests, and were reported in terms of descriptive statistics. The significance level was considered less than 0.05. Results: In this case-control study, 229 children with epilepsy were compared with a control group of 400 normal individuals. The mean age was 12.44±3.16 and 12.10±2.69 years in the case and control groups, respectively. The tonic-clonic seizure had the highest prevalence. Moreover, male gender, older age and more seizures per year were associated with lower QOL. Overall, epileptic children had significantly lower QOL compared to the controls. Conclusion Epileptic children have an overall lower QOL while factors such as old age, male gender, and high number of seizures per year reduce QOL in epileptic patients.


Introduction
Epilepsy is a brain disorder characterized by chronic susceptibility to experiencing epileptic seizures in affected individuals. An epileptic seizure is a transient occurrence of signs and/or symptoms due to abnormal synchronous neuronal activity in the brain (1). At any given time, it is estimated that 50 million individuals worldwide are diagnosed with epilepsy (2). In Iran, the prevalence of epilepsy is reported to be as high as  (6,7,8) and social withdrawal and isolation (9,10). When an individual has a chronic condition, for which a total cure is not expected, QOL is considered an important outcome measure for healthcare (11).
In the case of pediatric epilepsy, seizures are more complicated and need more elaborate concerns, due to the very demanding nature of childhood period and the high prevalence of the disease among children, with a prevalence rate of approximately 3-4 per 1,000 children (12,13,14). Epilepsy can have undeniable debilitating effects on children's well-being and QOL (15,16,17). This, in turn, can have severe effects on the development of a healthy character during childhood (18,19,20), which is directly influenced by development of a successful relationship with peers and having appropriate levels of independency. Thus, handling this disease can be highly challenging for both parents and their affected children.
QOL has been defined as the "subjective evaluation of individuals about the quality of their lives as it relates to their own personal expectations" (21).
Therefore, in any explanation on what variables are important to children's QOL, the epileptic child would be the most suitable referee for making such an appraisal. However, based on several reviews on QOL measures in pediatric epilepsy, the use of the affected child's own report has not been dominant in these studies (11,22). To the best of our knowledge, there have been few studies about epileptic patients' QOL undertaken in the Middle Eastern countries (23), with only one study specifically targeting the Iranian population (24). The overall aim of the present study, therefore, was to assess the impact of epilepsy and its treatment on the daily lives of epileptic children in Iran and also to compare and contrast experiences of these children with those of their healthy counterparts in Shiraz, Iran, based on the self-report KIDSCREEN27 questionnaire. The Kidscreen-27 is a well-validated, short, multidimensional measure to assess the healthrelated QOL in children and adolescents. It has five scales including (1) physical well-being, Moreover, the reliability of the questionnaire has been confirmed in several studies on Iranian children (25,26). This work is novel because it Iran J Child Neurol. Spring 2020 Vol. 14 No. 2 relies on both children and their parents' self-report and also on standard measures to assess the healthrelated QOL in Iranian children with epilepsy. To the best of our knowledge, there has been no such study conducted on epileptic children's QOL in Iran.

Inclusion and exclusion criteria
The patients in this study were recruited from epileptic children admitted at the Emam-Reza In such cases, seizure is usually triggered during the age of 6-60 months due to reasons other than CNS infections or electrolyte imbalances and the child has no previous history of seizures without fever.
Children with mental retardation and speaking disorders were also excluded from the study.
The control group members were randomly selected from different schools in the quadruplet districts of Shiraz.

Parent and child self-report questionnaires
The Emam-Reza Hospital is the main epilepsy center in the south of Iran. Thus, the target population of the study can be regarded as the representative of Southern Iranian population.
In this study, the KIDSCEERN27 questionnaire was

Statistical analysis
The obtained empirical data were analyzed using the statistical software SPSS 21 along with descriptive statistics (arithmetical mean and standard deviation), the Mann-Whitney test (due to inequality of data variance), and the Chi-square test. The significant level was set at p<0.05.

Results
In this research, 229 epileptic patients were compared with 400 normal cases. The mean age of children in the case and control groups was 12.44 ± 3.16 and 12.10 ± 2.69 years old, respectively. Reports of children from the control group showed that they were significantly more satisfied with their parents and more enjoyed their spare time, as compared to the patients. Moreover, the children were coping better with their peers, had less trouble concentrating at school, and were more productive in learning processes at school. The data obtained from questionnaires submitted by the parents also revealed similar results (Table 2).
In addition, the results showed that age was a discriminative factor for the QOL of epileptic patients, with QOL decreasing as the patient's age increased. However, in terms of physical wellbeing, the children's age had no significant effect on their report. The results also revealed that the girls significantly performed better in all of the questionnaire's subscales except those related to relationship with peers and school environment, as compared to the boys.
Controlling the disease was another determining factor for the child's QOL. As the number of seizures per year decreased, the patients' QOL significantly increased. However, even among patients whose disease was fully controlled, QOL was significantly lower compared to the controls.
Although patients who received a single antiseizure drug had better QOL scores compared to those receiving two or more drugs, the difference was not significant (p > 0.05).
It was also found that longer treatment of a patient with anti-seizure drugs led to lower QOL scores.
However, drugs' effect was insignificant on the children's physical well-being and the quality of their spare time (p > 0.05).
According to the results, except for physical health, the epileptic children showed significantly lower scores on psychological well-being, relationship with parents, autonomy, social support, interaction with peers and finally school environment. The reports of their parents also followed the same pattern.
The data also demonstrated that by increasing the age, QOL scores significantly decreased in all the measured criteria. Arya and his colleagues conducted a similar study on the QOL of children suffering from epilepsy. In agreement with our results, they found that older children were more prone to anxiety and lower self-esteem (30). This may be due to the higher self-awareness of these children regarding their disease or their further involvement in social issues as the age increases (31,32). Drugs' side effects can also be an effective factor considering the fact that older children have longer experience of anticonvulsants' side effects (33).
It was also realized that the girls significantly year (30,33,36,37). Moreover, no significant association was observed between seizure type and the patients' QOL. Although the results of the study by Arya and colleagues are in agreement with our results, many other studies suggest that seizure type is a contributing factor (33,36,38).
In this study, reports of both parents and their children were considered on the epileptic child's QOL. Accordingly, it was observed that reports of both parents and children on QOL items had similar patterns. However, in terms of physical well-being, psychological well-being and school environment, scores of the parents were lower than those of their epileptic children ( cases that the child cannot respond independently.
However, it appears that viewpoints of both parents and children should be considered concurrently.

In Conclusion
As stated previously, QOL is the self-perceived

Authors contribution
in this article Dr Peyman jaafari analyzed the statics and Pegah Katibeh, Soroor Inaloo, Fahime Fattah and Samaneh Mazloomi contributed to data gathering, data analysis and writing the manuscript.